Apologize in advance for length of this post. I've had RLS for since my early 40s and spent about 14 years on DA drugs. A not unusual story with augmentation and switching over to pregabalin about 3 years ago- but the pregabalin not being entirely effective for symptoms. At that time I was living overseas in Geneva and found a doctor who would prescribe methadone and started on a low dose combined with pregabalin. It was miraculous how well it worked. After some tweaking, settled on approx 3.5 mg of methadone and 200 mg of pregabalin every evening at 7:30.
This past December, my new RLS doc and I decided to try and reduce down the pregabalin and increase the methadone over a period of weeks (I really disliked being on that relatively high dose of pregabalin). Each week went up 2.5 mg of methadone and down 50mg of pregabalin. Beginning of January ended up at 7.5 mg of methadone and 50mg of pregabalin and for all of January worked well.
However, last Sunday I suddenly had a real shortness of breath and feeling very strange (hard to describe). Went to the ER and got heart, lungs, blood checked out and nothing showed up. My husband thought it was a panic attack, but I'm not convinced. I've never had a panic attack or real troubles with anxiety and wasn't/haven't been feeling stressed or worried. After researching Methadone side effects, thought it possible it might be the methadone so working with my RLS doc to come down off it slowly (currently down to about 3 mg night). Had to go back to Urgent care yesterday again because of severe breathlessness (have really been battling it off and on since Sunday; it just come and goes randomly in waves and does seem to get a bit better for a while after I take the methadone). I was given an Albuterol inhaler and a mild sedative (I wasn't anxious before but I certainly am now with these attacks)! It does seem to be helping but even at rest I feel a tightness around my diaphragm area.
So my question is does anyone have any experience with extreme shortness of breath with Methadone? - even after being on it at a dose of 3.5 mg for 3 years and more recently a dose of 7.5 mg for the past month. I've read breathlessness is a side effect but usually just after you start taking it. If it is the methadone, also wondering how long until I start to feel normal again. This is becoming somewhat debilitating... Thanks so much for any thoughts. This forum has been a huge help to me over the years.
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There have been many reports of respiratory depression on pregabalin and opioids.
However, nothing showed up at the ER.
This would indicate it is NOT respiratory depression but possibly panic attacks/anxiety associated with the sudden fast increase in methadone by such a large amount and the fast decrease in pregabalin, causing withdrawal symptoms of anxiety/panic.
(I developed opioid induced panic attacks & anxiety on Buprenorphine. It has resolved with a very low dose of pregabalin.,) You've increased the opioid by 3 times your previous dose and reduced the sedating effects of pregabalin by 4 times in a short time period.
Doctors always seem to recommend fast withdrawals but these drugs affect our brain chemicals and should be reduced very slowly. (I reduced from 150 mg pregabalin by 6.25mg every 2 weeks.)
So, if you're now on 3mg methadone, I would ask your doctor to prescribe 175mg pregabalin and then you can slowly, slowly reduce down to 50mg over several months. You may find 50mg isn't enough, but by reducing slowly, you'll see what works best.
Discuss fully with your doctor and agree a much slower titration down from 150mg pregabalin. Similarly, any increase in methadone.
Thank you for that Joolsg. Makes a lot of sense and I totally agree that the docs are a bit too eager to rush things. He is suggesting switching me to buprenorphine at a starting dose of 1 mg, which based on what I've read here, seems on the high side. If I do, will start at maybe half that.
Why change to a new drug when 3.5mg methadone worked for over 3 years? Why did the doctor increase it? Switching to another med may throw up further side effects so I would advise caution.
If 3.5mg methadone worked, stay on that and rethink the pregabalin, going back to a higher dose and titrating down much more slowly.
If he insists on the switch, 1mg is higher than the usual starting dose.
I manage on 2 x 0.2mg at 10pm and midnight. It's easier to increase slowly than to decrease from too high a dose.
Very good question. When I first had the shortness of breath attack, I contacted RLS doc to voice my concerns about the methadone. He first suggested splitting the doses, and when that didn't help to switch to buprenorphine. Sort of like an even swap, and I agreed as I perceived it to have less side effects (like breathlessness) than the methadone. But, if as you suggested, these were opioid induced panic attacks, it was more the rapid change in dosage than the methadone itself.
Not sure what to do but first just need to get back on steady ground as you suggested. I have certainly learned these opioids are to be treated with great caution.
Thanks for the info on the buprenorphine. I will discuss with him further. Do you have noticeable side effects with it? Why did you choose that one specifically? Many thanks
Methadone is not available here in the UK, except via drug addiction clinics.I had to push and provide evidence to get low dose Buprenorphine. I had exhausted all other options. I made a straight swap from 25mg Oxycontin to 0.4mg Buprenorphine overnight. The first night I tried Buprenorphine it stopped ALL RLS and I slept 8 hours. It was miraculous.
However, I woke up with extreme nausea and vomiting. It lasted over a week. I took medical cannabis for a week and it stopped the nausea.
4 weeks later I developed extreme anxiety and panic attacks. ( I recognised them instantly because it happened with Oxycontin as well).
Dr. Buchfuhrer had emailed advice when I was on Oxycontin and said to take pregabalin to counter the opioid induced anxiety/panic. It worked so I added a small dose of pregabalin at night and the panic/anxiety disappeared.
I also get opioid sweats with Buprenorphine. Similar to menopausal hot flushes. I take a small dose of cetirizine anti histamine and it reduces the worst sweats.
So I take 0.2mg Buprenorphine and 5mg cetirizine at 10 pm, 0.2mg Buprenorphine and 25mg pregabalin at midnight.
I agree that you need to get back on steady ground and hopefully, reverting to your previous dosages will achieve that.
You can then take things far more slowly and observe the effects.
Just to check. Did you have breathlessness on 3.5mg methadone or did it only start when your doctor doubled the dose? Why did he double the dose?.Was it no longer controlling RLS?
That is really interesting on your timeline with the panic attack as mine were also 4 weeks after upping the methadone and lowering the pregabalin. I’m really baffled why my rls doc - and he is at one of the US “rls treatment centers” -didn’t suggest that to me when I told him what happened. Also good to know about the sweats Have experienced that too on the higher methadone dose.
Thinking back I have had some brief instances of breathlessness for some time, but they quickly passed so I never paid much attention. Should have been more aware.
The change in dosage was actually my idea when I went to the rls clinic in early December. I didn’t like the feeling I had the next morning when I forgot a dose of pregabalin one night and have been reading recently about studies showing a growing problem with dependency associated with this drug. Also had some other side effects like blurry vision and feeling slightly off balance. Doc suggested reversing the 2 meds as I outline above. Maybe that schedule would work for some people but not great for me.
Thanks again for the input from you both. I can’t tell you how much it’s helped to understand this better and know that I’m not going randomly insane.. Hope all continues well for you. I’d read that there was research going on with the DA drugs to remove the component associated with augmentation but still effective for rls symptoms. Fingers crossed that comes to pass some day as would love to not deal with the opioids..
Dr Stefan Clemens in Carolina is doing studies on Ecopipam. Ecopipam dampens down D1 receptors so he thinks that taking Ecopipam WITH a dopamine agonist will stop augmentation. Hopefully the trial results will be released and we'll know whether it works. If they can stop augmentation, we could all go back on dopamine agonists.
I suffered severe respiratory depression on oxycodone some nights I was to scared to sleep as actually had to be consciously take each breath.
Buprenorphine works as equally as Methadone for controlling RLS however it hangs onto less receptors in the brain and I have never suffered respiratory depression . I have take 2 mg buprenorphine/subutex for over 3 years now works perfectly for me.
Thanks for that Shumbah. That's really helpful to know- yes this breathing thing is really awful to deal with. Have gone back up on the pregabalin to 150mg and keeping the methadone steady -now 3rd day back at 3.5mg, but still woke this morning with real shortness of breath.
Sorry, one more question Shumbah. How did you make the switch from oxy to buprenorphine - did you get completely off the first or just make a swap as my doc is suggesting to me.
Thank you so much. This information from you and Joolsg is absolutely invaluable. I did exactly what you said last night - cut the 2 mg tablet into 16 tiny pieces. Went with a total of 0.25mgs, divided into 2 doses: at 6 and at 10:30. Still on the 150mg of pregabalin as don't want to change that at the moment. Legs were pretty quiet but had trouble going to sleep, think mainly because I've been on high alert on the breathing issue. Can't imagine if I'd taken the -labeled- recommended dose of 2mg! (tho doc did tell me to start with 1mg). Next day now and think I'm better but am still having labored breathing starting at 11:00am. Will see what day brings - am hoping it's just going to take a bit of time to get methadone completely out of my system.
yes, ok will work to do that with the dose, thanks. I am having a bit of trouble still going to sleep, but think that's mainly because I'm so wired and still apprehensive about the whole breathing thing from last week. This morning, definitely feeling a bit more normal. I'm in New York State, about 90 min north of the city, so think can pretty easily get my hands on some cbd oil. All the best.
When we returned to the US last year, I started with the Yale Center for RLS headed by Brian Koo. They are very responsive and quick to answer emails; my only gripe is they didn't suggest or recognize I was apparently having opiod-induced panic attacks, as recognized by Joolsg. And sounds like the suggested starting dose for the buprenorphine was really too high for me.
Might be worth trying to make an appt w/ Glen Brooks if he's recommended. When I google him, he's head of NY ketamine Infusions - he also treats RLS?
If the pregabalin continues to cause blurry vision, you might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. Also Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and also might cause breathlessness and if so may be able to give you a safe substitute.
Thanks for this info. Have thought about the gabapentin as my RLS doc says they don't typically use pregabalin as a first choice drug - which was a surprise to me; I thought it was first line at this point. If I'm currently taking 150mg of pregabalin (tho would like to very slowly decrease that) that would be 900 of gabapentin and wow that sounds like a lot. But guess it is what it is. Currently the only OTC thing I'm taking is the iron bisglycinate every other night after eating, an occasional ibuprofen for something and just started with flonase as feeling a bit of congestion and didn't want anything exacerbating breathlessness.
I assume you know to take the iron bisglycinate at least 2 hours after a meal, coffee or tea. 900 mg is not a lot. And if you want to try gabapentin you can make a direct switch without decreasing the pregabalin first.
Have you had your ferritin checked? You really shouldn't be taking iron until you do so. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.
Did just have iron checked in December at my 6 month check up and it was over 100 but will have to go back and check on the ferritin and TSAT nos. Thanks for the heads up on that
I’ve been on low dose methadone for 3 years. The script is written for 3-5 ml but I usually do 3.5ml with no breathing issues. I hope you get this under control.
Thank you. Yes I was fine for 3 years as well on the 3.5ml dose along with 200 mg pregabalin. It was when I went up to 7.5mg methadone and decreased the pregabalin to 50mg (in an effort to lower/get off the pregabalin) that the wheels came off.
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